Entyvio for Crohn's Disease User Reviews (Page 2)

• Casey...
• November 13, 2015

"I have not been on it long enough. But it did control my diarrhea, not the pain. I was told because of my new diagnosis of Irritable Bowl Syndrome along with the Crohn's Disease, they are stopping the infusions to see if the pain is not a side effect from it. This is all I know about it so far. I hope this helps a little."

• Sunda...
• April 7, 2018

"I've suffered from Crohn's for over 50 years. Experienced major flare-up in May 2017. Taken off current meds and prescribed 20 mgs of prednisone. Health improved immediately. Started tapering down until I was down to 5mg in March at which time started first injection of Entivyo. I am down to 1mg of predisone now. Have had two injections to date and scheduled for a third April, 2018 to be followed by another in June. I realize I have to give the biologic a chance to work but I have not noticed anything positive from the treatment to date. Always fatigued with low appetite and joint pain. Sometime I wonder if it wouldn't be in my best interest to simply go on prednisone and feel good for a few years. My GI is very optimistic regarding Entivyo so we will have to see what happens from here."

• Anonymous
• Taken for less than 1 month
• August 17, 2017

"Only on my second injection migraine so bad I get nauseous ears ringing hear my heart beat in ears all the time its elevated constantly light hurts my eyes dizzy head goes black for seconds only going bathroom every three days scared to take my next dose"

• Acrexp
• Taken for 5 to 10 years
• November 9, 2019

"I was put on ENTYVIO after my colon was removed and J pouch surgery and still had symptoms involving the pouch and area just above the pouch. I have been on ENTYVIO for 6 years. I started at 8 week intervals but over the last 2 years have had to go from 8 weeks to 6 weeks now at 4 weeks do to symptoms returning before next dose. Testing showed that at 4 weeks the level of ENTYVIO in my system was far below the recommended level. I hope that it continues to work for me. I started on Remicade in 2005 when I was diagnosed with U. C. I was on it a few years but ended up failing completely to help symptoms. I was then put on Cimzia which I did not respond to at all. I then was put on Humira. I was on it till 2010 when thyroid cancer was found. After thyroid was removed I was put on ENTYVIO. Due to the cancer I can't have imuno modifier medications. From Oct 2010 till early March 2013 I was on oral medication. Azacol I think it was or I was on that prior to the colon surgery."

• Sam
• Taken for 6 months to 1 year
• June 26, 2020

"Entyvio never worked for me . I never had any joint pain so that was good but I had 7-8 doses until I changed to Xeljanz. Entyvio gave me SEVERE fatigue and not so much on Xeljanz... also seeing improvement now."

• Scoocha
• June 26, 2017

"Two years on it. Now having liver issues. Colon on recent colonoscopy was clear. Endoscopy showed esophageal varicies stage 1. Fiberscore Labs showed stage 4 fibrosis. Fiberscan the same. Fatigue, general and gut pain continues. Weight is stable but can't gain. Energy low. May need a med break."

• Theo
• October 20, 2016

"Started Entyvio in the middle of a flare up. I've had the most side effects from this one as compared to all past treatments. Frequent moderate-severe sinus headaches. Flushing, hot feeling. Took 9 months before we saw improvement but I was also on budesonide which might have been the cause of the improvement. Unfortunately it just doesn't seem worth it. I've heard better results for UC patients."

• Linds...
• February 8, 2018

"Just had second treatment. My treatments have been every 2 weeks. Crohns is still the same no pain relief at all. 1 hour after infusion nausea starts, diarrhea, joint and muscle pain, stomach pain, hot flashes, tired but trouble sleeping. Not sure if this is right for me"

• Chris-T
• October 20, 2021

"I have been on Entivyo for 1 year. I get horrible headaches for about a week after infusion. I have had Crohn's for 35 years, been on every medication and I don't know if I should continue on it. I've had 4 bowel surgeries and my poor body is still in pain and sick everyday. I fight through and try to stay positive but the headaches are really tough. Anyone else have headaches?"

• Fimk
• Taken for 6 months to 1 year
• January 10, 2021

"I am 67, male, 40 plus years of Crohn's Disease (CD). Several surgeries with only 5 feet of intestines remaining. I have been taking Entyvio for about a year now. It has worked to greatly slow the frequency and urgency of my diarrhea. However the joint pain it caused in me has me debating whether it is worth it. I have never had joint pain before and now I have trouble turning a door knob!"

• Miss...
• March 26, 2021

"Extreme fatigue, pain in arms and legs, headaches, constipation. Full time job trying to manage these symptoms, getting worse after 3 years of Entivyo. Crohns is under control, but no energy to live life. Doctor says this is the best choice I have. I’m alive, but not living. I may stop Entivyo and take my chances. Tried supplements, no help."

• JMV
• Taken for 1 to 6 months
• January 5, 2021

"Entyvio wears off a week or two before next infusion. I begin to get flare symptoms. I’m starting a six week infusion schedule. Otherwise after being on every conceivable biological, antibiotic, 5-ASA’,steroids and TNF blockers with the exception of stelara - entivio seems to work well. Unfortunately unlike Stelara, entivio only works on my gut and not other complications from my crohns."

• Emano
• Taken for 1 to 6 months
• November 15, 2020

"I started Entyvio as my first biologic ever for Crohn's Disease. I was TERRIFIED of reactions and side effects. It turned out to be great. I get a headache and tired the day of the infusion and that’s it for me! After my third dose (they say the magic dose) I noticed a vast improvement in my Crohns symptoms! It also drastically decreased my CRP levels in a matter of weeks ! Unfortunately, 14 days and 9 hours after my third dose, my lips started to swell. They are thinking it’s a delayed reaction and taking me off the drug. A chance that the swelling is just an extra-intestinal manifestation of my Crohns (which entyvio does not treat because it’s gut specific) but they don’t want to risk it. I also developed antibodies (apparently no one does!) but they weren’t at a level that I would’ve needed to stop but for the lip swelling. I’m so sad to have to stop entyvio :( it has been great and I’m scared to start something else!"

• Shannon
• Taken for 1 to 6 months
• April 26, 2023

"Entyvio has not improved my symptoms and is a really harsh medication. I am having serious side effects including high blood pressure, blurred vision, back and throat pain, confusion and inability to concentrate, rash on my face, fatigue, and several others. I would not recommend this drug to anyone. I am meeting with my doctor tomorrow to discuss alternative treatment."

• formi...
• July 25, 2021

"Diagnosed with Crohn's and started Entyvio a year and a half ago. My inflammation markers have been trending down this whole time and I am now in remission. This drug works very well for controlling my Crohn's. I did not have any remarkable or lasting side effects from Entyvio until recently. After my 16th infusion I started getting a rash around my eyes, itchy eye lids, and flaking skin. The dry skin patches have now spread to around my ears and mouth. If this side effect can be managed, I will have no issue with this drug."

• Farme...
• Taken for 6 months to 1 year
• August 17, 2021

"Been on this for just under a year now and seems to be doing the trick. Cimzia was no longer working and that was after remicade and humira. Running out of options it seems but luckily this drug seems to be working well."

• Mary
• Taken for 1 to 2 years
• September 16, 2022

"My son started Remicade and did not work , then we started Entyvio and has been on Entyvio for over a year, he had an ileostomy surgery unfortunately his colon had many polyps, this medicine works slow, real slow. It has controlled his symptoms. The side effects on him loss of hair, stuffy nose, his hands shake after the infusion for a few days, joint pains, then they go away. Compared to Stelara which I’m terrified to use based on the horrible side effects depression, mental issues, etc I prefer to have this one, I know some people don’t react to it do good luck ! This illness is uncontrollable!!! Hate it ."

• Rose
• May 2, 2021

"Entyvio did help me took almost 2 years but now they won't help with insurance copay, and I cannot take it any more it is way to expensive, I am really so angry this has happened, I never thought I could not get the meds I need"

• Kevin...
• Taken for 2 to 5 years
• March 15, 2022

"I have been receiving Entyvio infusions for about three years for a Crohn's diagnosis of 40 plus years. I generally feel good but am plagued by frequent bowel movements - two to five time per day. Keeping a normal weight for my height is a challenge as it is a daily struggle to eat enough to replace nutrients lost during my daily purging. My current colonoscopies show that inflammation in my small intestine is 'stable' meaning it hasn't improved or gotten worse. When I first went on Entyvio I was told my Crohn's was in remission. Now I'm questioning whether Entyvio has run its course and time to try another treatment. I would rate the effectiveness of Entyvio at about a 4. If the number of bowel movements were to improve I would rate it close to and 8 or 9."

• Anonymous
• Taken for 2 to 5 years
• March 24, 2022

"I’ve had Crohn’s since 1968. I’ve been on asulfadine, prednisone, Bentyl, amitripaline, parnate, remicade. Prednisone worked but the side effects impacted my joints. Second surgery in 2006. Started Imuran. It worked ok but not great. At my age, the doc said lymphoma potential was becoming a possibility. So I started Entyvio. It’s been over two years. I have my life with no issues except getting the infusion every 8 weeks. No side effects. Colonoscopy after 2 years showed over 90% reduction in inflammation. Biggest issue is losing 2 feet at the end of the small intestine resulted in needing B-12, D, E, K, and iron. BMS down to two a day unless I have certain spices or fatty meat, or anything deep fried. No medicine works for everyone, but this one has worked for me."

• Henry
• June 27, 2024

"Entyvio working well now after 9 weeks with no side effects to speak of. I was ready to try Stelara if the Entyvio didn't kick in by week 10. As I understand it, Entyvio works incredibly well in 15 percent of patients, almost like a cure for Crohn's. Not as great for others who get on it. Such a relief to feel strong and positive again. To be more active without fighting fatigue and inflammation... and those terrible nights. I've started to test it out with some high fodmap foods which I would've never done two weeks ago... with great success. Regular exercise and alternative therapy and oils definitely help to boost the Entyvio, get me through the transition and lift mood. Fingers crossed... and no more prednisone."

• Don
• Taken for 1 to 6 months
• September 27, 2023

"I started Entyvio some 26 weeks ago and I've experienced relief. I noticed diminishing symptoms from Crohn's disease around week 3. I did experience some discomfort prior to the second infusion at 8 weeks as well as just prior to the third. My gastroenterologist has now scheduled the infusion every 6 weeks and I look forward to full remission."

• Dange...
• Taken for 6 months to 1 year
• October 16, 2018

"My husband took this drug a couple years ago for Crohn's and it caused him to have a stroke. He is lucky to be alive but would never recommend this drug to anyone."

• Worse...
• Taken for 1 to 6 months
• March 24, 2017

"Flushing similar to hot flashes, nausea, severe headaches/migraines, increased diarrhea the day of infusion for up to two weeks after."

• Nick
• January 29, 2021

"I was nervous to try something other than Remicade, but since the antibodies for Remicade were increasing I had to try something. This drug has been a good substitute with no noticeable side effects."